a family in the making

Month: May 2015

I am now officially a patient of Braverman Reproductive Immunology. Last week, I sent an email to my local clinic telling them I would not be proceeding with my planned IVF. I felt legit sad writing this email, as I’ve become quite attached to everyone there. They are a class act — kind, compassionate and just generally awesome. But alas, it is time to start a new chapter.

That new chapter begins next week. Bright and early Wednesday morning I’ll head to Braverman’s NYC office to have blood drawn for immune testing. 15 vials of blood, to be exact. I asked. The lab rep was like, “Wellll, I usually don’t like to tell people this ahead of time, but…”

Tim is getting three vials drawn, by the way. A mere three.

After bloodwork, I will meet with the surgeon. He’s going to check out the blood flow to my uterus using a doppler ultrasound. I told my boss about this today and she was all, “Oooh, will it be like a weather map?” I don’t know the answer to that, but I sure hope so. Uterine weather map! Just what every gal’s always wanted. Anyway, apparently this doppler ultrasound can help detect endometriosis. Based on that and the rest of the examination, he’ll assess whether I need surgery — if I do, I’ll get it the next day. Unless he’s like, “Hey girl, you do not need surgery. You have the prettiest uterine blood flow I’ve ever seen,” I think I’m going to go ahead with it. I’d really like to know beyond a shadow of a doubt if I have endometriosis.

After surgery, if it ends up happening, Tim and I will stay in a hotel for a couple of nights while I recover. Staying in a hotel near New York isn’t cheap, so we’re pretending it’s a mini vacation. This “romantic getaway” will be our birthday present to each other this year (we both have birthdays in the summer). Surgical vacations, guys. They’re all the rage! Seriously, though, I’m kind of looking forward to a few quiet nights in a hotel, even though I’ll likely be in pain and doped up on opiates. I’ve clearly lost my mind.

That’s about all I got. I won’t actually meet Dr. Braverman this visit (or maybe never, as we will likely get our immune testing results over Skype), so that’s kind of a bummer. If you could send good thoughts my way on Thursday, the day of surgery, I will love you forever. Well, ok, I already love you forever, but I promise to love you forever-er.

Your dad and I saw the movie Cinderella a few weeks ago — not the cartoon version you know, but another version directed by this guy named Kenneth Branagh. It got a lot of criticism for being blonde-centric and sexist and some other words you don’t know the meaning of yet. I admit, those things are pretty much all true, but I still loved it.

I love all fairy tales. I always have. It’s not the princesses or the knights in shining armor that I adore — what I love most is the dark and the light, side by side. For every happily ever after, there’s a stepsister slighted, a servant left crying in the garden, an overprotective mother, or an evil queen who would give anything to stay young forever. And if you think about it, that’s just how life is. Sure, there is so much joy in this world, but behind every happy occasion there’s someone, somewhere feeling sad or lonely or left out.

The cure-all for sadness in fairy tales is always the same: magic. A swipe of the wand or true love’s kiss can make it all better. Sounds good, right? Must be nice for those storybook characters to have all their woes cured by some silly wand.

In the stories, it’s often a prince that rescues a princess, but in real life it’s even better. In real life, we rescue each other. We fight for each other. I see it every single day. You’re too young to know about this yet, but one of our friends is battling brain cancer right now. Let me tell you, his wife is one bad-ass dragon slayer. I’ve never seen someone fight so ferociously. She will do anything in her power to make sure he gets the care he needs, to give him as many happy days as possible. Or when your grandma Peggy died, people sent me cards and flowers. They dropped off meals, came by to walk our dogs and gave me countless hugs. All of those little rescue attempts made a really tough situation so much more bearable.

And don’t even get me started on you. There’s nothing I wouldn’t do to keep you safe. I’d crash through briar thorns, release genies from bottles and battle a thousand giants. I’d walk the earth to find you if you were lost. I’d sprout wings and grow a pair of googly eyes if I knew it would make you laugh. I’d even give you my last piece of chocolate, if you reeeeeeally wanted it.

All of that adds up to one very specific type of magic — love. Just like fairy tale magic, love really does make the world a better place. Every time you act out of kindness, you blot out some of the bad. You make the darkness recede, just a little bit. We can’t stop bad things from happening, but we can love fiercely and faithfully. We can make life beautiful, even in the hardest of times.

So after my last post, I was feeling good. I had a plan. I was going to follow that plan, but I didn’t feel attached to the outcome. I felt like our child would come to us in whatever way he or she was meant to.

But what ever goes according to plan? Nothing, you say? That’s right. Nothing.

Warning: this might get long. And boring. Long and boring, yay!

This week we had our two second opinion consults. First up was CCRM. We spoke with Dr. Surrey and he was quite lovely. He had some interesting suggestions. One was that Tim get a next-level sperm test, the name of which escapes me now. Then he suggested I do a double trigger shot. He was thinking that the reason I had half as many mature eggs as follicles both cycles was because they weren’t responding properly to the trigger. He also does not consider someone DOR if they have normal FSH, AMH and antral follicle count. Finally, he said that I might as well transfer our frozen embryo at my current clinic before coming out to Colorado, and send him a thank you note if it works. We liked him. I think CCRM is a great clinic. I think they have amazing labs. Other than the labs, though, I didn’t feel like they had much more to offer us than our current clinic. And the multiple trips to Colorado alone would put us in a bad financial place, not to mention the out-of-network costs for the actual treatment. Case closed.

The next day we spoke with Dr. Braverman. He is a reproductive immunologist. This is a very new field, like so new there are only a couple of these doctors in the country. I first heard about him through my friend over at Spirit Baby Come Home. She has had a lot — way too many — miscarriages. She worked with Dr. Braverman and is now a few weeks away from giving birth. As soon as I heard of him I thought, Hmmm, that guy sounds interesting.

One of his main areas of research is endometriosis, particularly “silent endometriosis,” which is where you have the condition, but experience no symptoms. This piqued my interest because a close relative had this exact thing. She was diagnosed with unexplained infertility and had multiple IVF failures. They accidentally discovered that she had endometriosis during a surgery for something else. They removed it and then her next IVF worked. I’ve asked both of the doctors at each of the clinics I’ve been to if I should be concerned about endometriosis based on my family history. They both said that, no, I shouldn’t be worried. Even if I had endometriosis, the way to work around it is IVF.

Braverman completely disagrees with my doctors’ assessment. Through his reasearch he’s learned that endometriosis negatively impacts egg quality, often making it look like a patient has DOR, when in fact they don’t. He also says that Antiphospholipid Antibody Syndrome typically goes hand in hand with endometriosis.

With every mishap that happened these last few months — miscarrying the genetically normal embryo, getting diagnosed with a blood clotting condition — I started to wonder if I should contact him. But he is a recurrent miscarriage specialist and I’ve “only” had two, so I felt weird about that. Plus, I was comfortable at my clinic (I really do love them!). And finally, Braverman is beyond expensive. So I never pulled the trigger. I kept thinking about him, though, and wondering. Then after that last failed IVF and DOR diagnosis, I was like, ok, let me at least talk to the guy.

So I did. I had read a bunch of his articles before we spoke to him, so I was not surprised in the least when five seconds into the phone conversation he was like, BOOM, I think you have endometriosis. He said my family history, combined with my elevated anticardiolipins, combined with my diminished ovarian response, points strongly towards that diagnosis.

Even if what he was saying was true, the fact remained that we couldn’t afford to get treatment with him without sacrificing every penny we had and then some.

But then he told us that he would collaborate with a doctor about 45 minutes from us. This is huge. That means I could be under his care and still in-network with my insurance. Then his financial person got on the phone and said that if I needed surgery to remove endometriosis, the hospital they use is in our network. Meaning the surgery would be fully covered, too. This is even huger. I figured he would be recommending surgery, but I knew there was no way in hell we could swing out-of-network surgery. But it turns out that the only out-of-network things we’d have to pay for would be his initial testing and consulting fees.

Uh, so all of a sudden this doctor that I thought was totally out of reach just became a real possibility. It felt like the Universe had tipped its hat to me and said, “Here you go, wish granted.”

So we’re doing it. We figure the only thing we have to lose is time. The soonest we’d be able to do an IVF going this route would be September. We were just about to start a cycle at our current place in two weeks. That means we would be done with that cycle and, if needed, a frozen transfer and potentially be onto adoption by September. Now everything will get pushed back by several months.

But it feels like we would be doing that next cycle at our clinic just to do it. Which is kind of a yucky feeling. Don’t get me wrong, I don’t think Dr. Braverman is a miracle worker, at least not for everyone, but I do think that immunology is really the only avenue we haven’t explored yet. And, provided that he actually finds an issue, I think we have a better chance with him than our current doctor. How much better, I have no idea. It’s still nowhere near a sure thing, or even on the right side of the odds.

Then there’s always a risk that we do all the immune testing and get the surgery, and he finds absolutely nothing. I think in that case I would feel pretty stupid that my hunch led me nowhere.

In the end of the day, there is no right answer. But I do think it’s worth giving Braverman a shot.

In the meantime we plan to continue researching and saving for adoption. We’re going to try and do as much of the adoption leg work as we can so that if this hail-mary IVF doesn’t work we can jump right into it.

I’m not going to lie, these last few weeks have been rough. Really rough. In some ways, this failed IVF cycle hit me even harder than my last miscarriage. I know that might seem strange, but after our last loss, I still had so much hope. I knew IVF worked for us, and it seemed like maybe it was just a matter of time before we got lucky again. But let’s just say the last cycle and its accompanying diagnosis of DOR was a rude awakening. I’m not saying IVF can’t work for us, but it won’t be easy. Tim and I had to think hard about if we really wanted to fight this uphill battle to have another biological child. Because that’s what it is from here on out–a decidedly uphill battle.

So I did a lot of crying, a lot of feeling sorry for myself and, for lack of a less cheesy term, a lot of soul searching. Tim and I had several long, difficult talks. In the end, here’s what we decided.

There’s a limit to how much my body can deal with–I’m talking about the hormones, the poking and prodding, the minor surgeries, etc. I’m almost at my limit.

There’s a limit to how much our family can handle–the stress of endless appointments, injection timing, days off of work and in general putting our life on hold for treatments. We are almost at that limit.

There’s a limit to how much Tim and I can cope with the emotional roller coaster of hope and sadness, hope and sadness. We are almost at that limit.

We have a deep longing to parent another child. We will do almost anything to get there except ruin our marriage, destroy our financial future or negatively impact our relationship with the child that we already have. Do we have a deep longing to give birth to another child that looks just like Lettie? Nope. We want to parent. We want to share our love for life with a child. We want Lettie to have a sibling. These are the things that matter to us.

To that end, here’s our plan.

Because it is covered by insurance, we will do one more IVF cycle with our current doctor, likely in June. To prepare for that I’m taking DHEA and CoQ10 (both supposed to help with DOR). I’ve always read that you need to take these things for at least three months to make a difference, but my doctor thinks it’s still worth taking in the short term. She says three months is what’s been studied, so that’s why everyone says three months. Less than three hasn’t been studied yet, but that doesn’t mean it won’t help. There will be a new protocol this time, called micro-flare. It’s basically the last-ditch protocol for ailing ovaries. Birth control is typically used, but because of my blood clotting issue, my doctor says no birth control for me ever again. So we’ll do estrogen priming instead. Unless something crazy awesome happens (you never know), that’s likely it for us for fresh IVF cycles.

We will keep our phone consults with CCRM and Dr. Braverman next week. We’ve decided not to pursue CCRM beyond that call, but they might say something interesting that we can take back to our doctor. We may or may not end up traveling to NY to see Dr. Braverman for immune testing, depending on the cost with out of network insurance. We have decided that we will ultimately not pursue treatment with him, but I would still like to know if I have any immune issues (other than the one I already know about), should we decide to continue trying on our own or use donor eggs in the future.

If the fresh IVF in June doesn’t work, we will transfer our one remaining frozen blastocyst.

After that? We are all in for adoption. It’s time for a new chapter. We need to move on, and move forward.

We went to our first adoption support group this week. It was kind of great and kind of terrifying. It really put into perspective how long the process takes, and how much of yourself you need to put into it. It has just as much potential for heartbreak as infertility, but hopefully, at the end there will be another child. It’s not a sure bet–nothing is–but it’s as close as you can get in this world.

So here we are.

Still sad from all that has come to pass, yet steadfastly hopeful for the future, we find ourselves preparing for a whole new journey.

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